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Communication with patients and families 

Communication with patients and families
Chapter:
Communication with patients and families
Author(s):

Anna Spathis

, Helen E. Davies

, Sara Booth

, and Max Watson

DOI:
10.1093/med/9780199564033.003.008
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Subscriber: null; date: 23 October 2019

  • Introduction [link]

  • Barriers to communication in advanced disease [link]

  • Discussion of prognosis [link]

  • Advance care planning [link]

  • Practical communication skills [link]

  • Sharing bad news [link]

  • Communicating with carers [link]

  • Communicating within healthcare teams [link]

  • Further reading [link]

Introduction

Inadequate communication is one of the greatest barriers to the provision of good end of life care. A number of studies have attempted to define a ‘good death’ (Table 8.1) and, unerringly, the majority of constructs rely on good communication between patients and healthcare professionals.

Table 8.1 Components of a ‘good death’3

Clear decision making

Clear communication about treatment decisions and future wishes empowers patients.

Preparation for death

Patients and carers want to know what to expect, and to have time to prepare.

Completion

This may include life review, resolution of conflicts and saying goodbye.

Contributing to others

Patients may want to contribute to the well-being of others.

Affirmation of the whole person

This provides dignity, and respects the context of patients’ lives, values and preferences.

Pain and symptom management

Control of symptoms can optimise comfort and quality of life

There are two vital components of high quality communication during end of life care:

  • Acknowledgement of poor prognosis:

    • It is impossible to plan and receive good end of life care without communication that openly acknowledges progressive and irreversible disease with a limited prognosis.

  • Advance care planning (ACP):

    • This is a process of discussion about future care that occurs between a patient and their healthcare provider. If the patient wishes, it may also include family or friends.

    • An ACP discussion may include the individual's concerns, preferred future place/providers of care, and future treatment preferences.

There is consistent evidence that the majority of patients (>70%) want to undertake these conversations. Patients with non-malignant chronic respiratory disease appear to have even greater information needs than those with cancer.1 , 2 However, these needs are not being met.

  • Many patients, particularly those with non-malignant disease, are never given the opportunity to take part in discussions about their prognosis, and their future wishes and preferences.

  • There is research evidence that patients rate professionals poorly in the areas of discussion of prognosis and the process of dying.

  • A large proportion of complaints about healthcare in acute hospitals relate to care at the end of life, and the majority of these reflect inadequate communication.

Early and good-quality communication is particularly important in advanced respiratory disease because of the typically unpredictable and rapid terminal decline. During an acute deterioration, there may be insufficient time to make plans and, furthermore, patients may lack capacity to make decisions regarding their future care. Healthcare professionals are notoriously poor in judging patients’ quality of life and likely wishes and preferences. It is therefore vital that patients’ views are clarified in advance.

Poor communication has a number of adverse consequences:

  • Patients lose control, autonomy, and independence, the three factors most valued at the end of life.

  • Fears and concerns are compounded by not being shared and addressed.

  • Patients and carers lack time to make important preparations for death, such as organizing affairs, writing a will, and planning the funeral.

  • Death may not occur in the place of choice and the people of choice may not be present.

  • Unwanted life-prolonging measures may be continued inappropriately.

References

1. Curtis J, Wenrich M, Carline J, et al. (2002) Patients’ perspectives on physician skill in end-of-life care: differences between patients with COPD, cancer, and AIDS. Chest; 122: 356–362.Find this resource:

2. Edmonds P, Karlsen S, Khan S, et al. (2001) A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer. Palliat Med; 15: 287–295.Find this resource:

3. Steinhauser K, Clipp E, McNeilly M, et al. (2000) In search of a good death: observations of patients, families, and providers. Ann Int Med 132(10): 825–832.Find this resource:

Barriers to communication in advanced disease

There is strong evidence that the majority of patients with advanced respiratory disease wish to take part in advance care planning discussions, and yet only a minority are given this opportunity. A number of healthcare professional and patient factors hinder communication in those suffering from advanced respiratory disease.

Clinicians communicate badly for a number of reasons:

  • Difficulty in timing discussions because of uncertain prognosis.

  • Belief that patients are not ready to discuss end of life issues.

  • Concern that frank communication will take away patients’ hope.

  • Fear that admission of poor prognosis would erode patients’ and families’ trust in medical staff.

  • Reluctance to have to admit to ‘failure’ of medical treatment.

  • Perceived lack of time in consultations.

  • Lack of training in communication skills, particularly in relation to ‘difficult conversations’ about dying.

  • Perceived conflict between the goals of chronic disease management, such as active self-management, and end of life care.

Patients, too, can hinder good quality communication because of a number of factors:

  • An expectation that healthcare professionals will initiate discussions.

  • Lack of understanding that non-malignant diseases, such as COPD, are life-limiting conditions.

  • Uncertainty as to which clinicians will be involved during the end of life phase.

  • Fear that discussion of dying would embarrass medical staff by implying treatment failure.

  • Lack of certainty about the type of care that would be wanted when less well.

  • Fear that staff will ‘give up’ on them earlier if they seem to have accepted that they are seriously ill.

  • Societal taboos that inhibit open discussion of death and dying.

Uncertain prognosis

‘Uncertainty is the only certainty there is, and knowing how to live with insecurity is the only security.’

John Allen Paulos

Accurate prognostication is virtually impossible in advanced non-malignant respiratory disease. This is the greatest impediment to good advance care planning. The typical illness trajectory involves a very slow decline, punctuated by brief episodes of acute deterioration, with death occurring unpredictably during any one such episode. The lack of a clear end of life phase makes timing advance care planning discussions difficult.

  • Patients and their carers need information much earlier than is perceived by healthcare professionals.

  • With sensitive communication, it is unlikely that discussions will occur too early.

  • Timing difficulties should not lead to communication paralysis.

Societal taboos

Death and dying appears to be the last great taboo in the society of developed nations. Reduced mortality in younger people and the fact that most people now die in institutions has markedly reduced familiarity with dying. This leads to a societal lack of openness and discussion about death and dying, and hinders communication within families and between patients and professionals.

  • This important deterrent to communication is increasingly being recognized, including at a national level. In the UK, the Dying Matters Coalition (see Communication with patients and families [link]) has been set up to promote increased public awareness of death and dying.

  • Schools, universities, religious organizations, solicitors, funeral directors, and hospices all have a role to play in promoting open discussion, contributing eventually to a shift in societal attitudes towards death. Some commentators have advocated a ‘public health’ approach, aiming to integrate and normalize end of life care within society.1

Fear of destroying hope

Healthcare professionals fear destroying patients’ hope and become concerned that open discussion of a poor prognosis would be perceived as medical failure, eroding patients’ trust in them. Although understandable, these concerns are unfounded, and indeed the converse may be true.

  • Fears that are not discussed are often worse than reality.

  • Hope and trust are sustained by open communication that both acknowledges reality and encourages development of realistic goals.

  • Relationships between patients and clinicians are enhanced by compassionate communication that gives patients control, empowering them to plan for the future.

Reference

1. Kellehear A (2005) Compassionate Cities: Public Health and End of Life Care. Routledge, New York.Find this resource:

    Discussion of prognosis

    ‘Earlier recognition of people nearing the end of their life leads to earlier planning and better care.’

    Gold Standards Framework

    Communication about end of life care cannot, by definition, occur without acknowledgement of irreversible, progressive disease and a limited prognosis. Prediction of prognosis is, however, very difficult in those with advanced respiratory disease, particularly for those with chronic non-malignant lung disease. This difficulty forms the greatest impediment to discussion of prognosis and subsequent advance care planning.

    Prediction of prognosis

    Prognostication is considered in detail in Communication with patients and families Chapter 4, [link][link]. The unpredictable disease trajectory in advanced non-malignant disease makes prediction of prognosis particularly challenging.

    Prognosticating in lung cancer

    • Ask the ‘surprise question’, an intuitive question that integrates a large number of clinical factors: ‘Would I be surprised if this patient were to die in the next 6–12 months?’ If the answer is ‘no’, it is time to consider discussing prognosis and advance care planning.

    • Assess the rate at which the patient's condition is changing. If deterioration occurs month by month, the prognosis may be measured in months; if week by week, in weeks; and if day by day, in days.

    • Assess performance status. Patients that spend more than 50% of their waking time lying down tend to have a prognosis of less than 3 months.

    Prognosticating in non-malignant chronic respiratory disease

    Several prognostic models have been developed in patients with non-malignant disease that attempt to quantify an estimate of survival, such as the BODE index for patients with COPD (see Communication with patients and families Chapter 4, [link]). Such formal scores tend to be unreliable because of the inherently unpredictable nature of the disease. Falsely positive predictions of survival can give an excuse to delay advance care planning discussions.

    • Again, ask the ‘surprise question’: ‘Would I be surprised if this patient were to die in the next 6–12 months?’ On admission to hospital, always ask, ‘Would I be surprised if this patient were to die during this admission?’ If the answer is ‘no’, acknowledgement of prognosis and advance care planning is needed.

    • Ask about severity of breathlessness. The degree of dyspnoea has been shown to be a more reliable indicator of both a poor prognosis and a willingness to discuss end of life issues than disease severity or pulmonary function.

    Recommendation in advanced respiratory disease

    Simple and intuitive triggers for the initiation of discussions of prognosis and advance care planning, such as the ‘surprise question’, are recommended above formal prediction scores.

    • This pragmatic approach is easy, rapid, and feasible in patients with advanced disease.

    • The intention is to anticipate the possibility of entering the last year of life and to trigger appropriate discussion, rather than to make a formal prediction of survival time.

    Communicating prognosis

    Good communication skills are a prerequisite for these sensitive discussions.

    • Use open questions such as ‘Have you any concerns about the future?’ and ‘What are you hoping that we might be able to achieve?’

    • Pick up on cues from patients and carers, such as ‘I'm worried that I'm not able to…’ Expressions of ‘worry’ or anxiety reflect underlying concerns about the future.

    • Respond to cues by showing willingness to talk about the future, and consider checking with the patient that this is what they would like to do. ‘I can see that you're thinking about the future—I am too. Is this something you would like to talk about in a bit more detail?’ Patients usually respond in the affirmative, and permission for further discussion has now been given.

    • Encourage patients to undertake such discussions. ‘Many people with advanced disease find that the fears in their mind are actually worse than the reality.’ ‘Sometimes talking about your worries can make them seem more manageable.’

    • If there are no cues from the patient, broach the subject honestly and with compassion: ‘We're not very good at predicting what the future holds with COPD. Sometimes people can live for several years with advanced disease, but if there is a sudden deterioration it is possible one can die much sooner.’

    • ‘Chunk and check’: give small amounts of information at a time and check that the patient understands and wants to continue the discussion. Patients usually want to have these discussions but do need to feel in control of the content and extent of the conversation. Use the techniques for breaking bad news given on Communication with patients and families [link][link].

    Prognosticating is a notoriously inaccurate process. Both over- and underestimating prognosis can cause significant distress to both patients and their families. Talking in terms of ‘many months’, ‘weeks to short months’, ‘days to short weeks’ can be helpful, without being too specific.

    Advance care planning

    Definitions

    Advance care planning (ACP) is a process of discussion about future care between a patient and their health carers. If the individual wishes, family and friends may be included in the discussion. Awareness of the life-limiting nature of the disease is a prerequisite to advance care planning. An ACP discussion may include:

    • further exploration of understanding of the illness and prognosis

    • eliciting the patient's concerns and fears

    • discovering important values or personal goals of care

    • establishing the patient's preferred place and providers of care

    • discovering the patient's wishes for future treatment, such as antibiotics, NIV, or invasive ventilation.

    Advance care planning differs from planning in general in that ACP takes place in the context of anticipated future deterioration, which may be associated with a loss of capacity to make decisions.

    Principles

    • The process of ACP is voluntary. Although most patients benefit from ACP discussions, some individuals do not wish to confront future issues, and this should be respected. Initiation of such discussion must always be undertaken sensitively.

    • ACP should be a patient-centred dialogue, focusing on the views of the individual patient. It may be informed by the views of family members or friends that the patient invites to participate.

    • ACP is a dynamic process; it usually entails a number of discussions over time. The discussions may also evolve, with changes in goals of care, concerns, and preferences.

    • All staff involved in the care of patients with advanced disease should be alert to cues that an individual may wish to discuss the future.

    • Staff initiating ACP discussions should be trained or competent in effective communication skills. They should have sufficient knowledge of treatment and care options to enable the patient to make an informed decision.

    • Patient confidentiality should be respected, as always. Information should not be shared with family members or friends without the patient's consent. Sharing information with healthcare professionals should be on a ‘need to know’ basis.

    Practical points

    Timing

    Patients usually expect healthcare professionals to initiate ACP discussions. A number of factors may provide a trigger for staff to consider advance care planning:

    • A healthcare professional would not be surprised if the patient were to die within the next year (the ‘surprise question’, see Communication with patients and families [link]).

    • The patient gives cues that he/she is worrying about the future, for example by expressing concern about who will care for them at home.

    • There have been multiple recent hospital admissions.

    • Non-invasive ventilation has just been used for the first time during an acute exacerbation of disease.

    • There has been a recent significant event such as the death of a spouse or close friend.

    Setting

    ACP discussions need to take place in a setting that is conducive to open and sensitive communication. Discussion should take place in a private, quiet, and comfortable room, with the prospect of 30 minutes or more of uninterrupted time. A busy hospital or general practice clinic setting, with 10-minute appointments, is rarely appropriate for advance care planning discussions. A number of settings can support fruitful ACP discussions:

    • At home, for example a domiciliary visit by a specialist nurse.

    • In a private room on a hospital ward, a day or so prior to discharge.

    • In a hospice or respite care setting.

    Capacity

    A patient's capacity to decision-make should always be established prior to undertaking an ACP discussion. Capacity is decision-specific, so lack of capacity to make a particularly complex decision should not preclude all care planning discussions (see Communication with patients and families Chapter 9, [link][link].)

    Communication skills

    Appropriate communication skills are a prerequisite to ACP discussions, and are described on Communication with patients and families [link][link]. Most professionals working with patients with advanced disease already have the ability to undertake care planning. A lack of confidence in using existing skills is more common than an actual lack of skill.

    Documentation

    It is vital to document accurately the outcome of any ACP discussion. This usually occurs in the form of a statement of preferences and wishes or, on occasion, a formal advance decision to refuse treatment (ADRT). Communication of the outcomes of the discussion to the healthcare teams involved in that patient's care across all settings is vital.

    Statement of wishes and preferences

    A statement summarizing beliefs, values, wishes, and preferences should be written in a patient's notes. This information should ideally also be written in a letter and sent to all other relevant health carers, as well as to the patient. The patient's confidentiality should be respected and consent for the information to be shared should be sought explicitly.

    A statement of wishes and preferences is not legally binding, but does have legal standing. It must be taken into account and used to help judge ‘best interest’ for patients who lack the capacity to make decisions for themselves.

    Advance decision to refuse treatment (ADRT)

    A small minority of ACP discussions lead to the creation of a legally binding ADRT (see Communication with patients and families Chapter 9, [link]). However, ADRTs are only of limited use. Future medical events can usually not be predicted in detail, and the advance decision may no longer be valid or applicable at the time when it is needed. Overall the drive and focus of ACP should be on establishing a patient's wishes and preferences, rather than on the creation of a legally binding document.

    Key points:

    • Advance care planning (ACP) should occur when a person is slowly deteriorating, rather than during an acute exacerbation.

    • ACP should occur early in case of future loss of capacity. It is not ‘someone else's problem’; take responsibility and organize promptly.

    • Patients expect healthcare professionals to initiate the discussion.

    • Choose the timing and context carefully whenever possible, but do not use logistical difficulties as an excuse for failing to initiate ACP.

    • Most patients wish to undertake ACP discussions; the minority who do not should not be pressured to agree to discussion.

    • ACP is a dynamic process that is rarely completed during a single discussion.

    • An open question style of dialogue is key to successful ACP.

    • Initiation of treatments that may be difficult to withdraw, such as NIV, should be preceded by ACP discussions.

    • The outcomes of an ACP discussion should be documented in a statement of wishes and preferences.

    Practical communication skills

    ‘When people talk, listen completely. Most people never listen.’

    Ernest Hemingway

    Good communication is a basic clinical skill. There is evidence that effective communication skills can lead to a wide range of benefits:

    • Patients’ problems and concerns are identified more accurately, and health outcomes improve as a result.

    • Patient satisfaction increases significantly. Psychological distress reduces and patients adjust more quickly to challenging circumstances.

    • Patient compliance improves, and they become more likely to adhere to treatment or advice given.

    • Clinicians with good communication skills experience greater job satisfaction and less work stress.

    Challenges in respiratory disease

    Communicating with patients with advanced respiratory disease can be particularly challenging. A number of factors mean that professionals working with patients with advanced respiratory disease need to have particularly effective communication skills:

    • Deterioration in condition can occur very rapidly, giving limited time for communication and establishing patients’ management preferences.

    • Loss of decision-making capacity can occur rapidly with the onset of respiratory failure.

    • Patients with chronic non-malignant disease are at particular risk of becoming anxious or depressed because of the typically lengthy and unpredictable trajectory.

    • Breathlessness and the fear of dying acutely breathless or choking can lead to significant distress, and concerns that are challenging to articulate.

    • Misconceptions about advanced non-malignant disease are common, such as lack of recognition of the progressive and life-limiting nature of the disease.

    Advance care planning discussions may need to be initiated earlier than in many other advanced diseases. Communication in relation to prognosis in chronic non-malignant disease is particularly challenging.

    Key skills

    A framework for effective communication, based on the Calgary Cambridge model1 is outlined in Table 8.2. Discussion of prognosis and advance care planning require particular focus on the following process skills.

    Table 8.2 Framework for effective communication (adapted from the Calgery Cambridge model)

    Task

    Skills

    Comments and evidence

    Initiating the session:

    • establishing initial rapport

    • identifying reasons for consultation

    • Listen without interruption.

    • Summarize main problems and screen for others.

    • Negotiating agenda.

    • Doctors interrupt patients after a mean time of only 23 seconds.

    • Most patients who are allowed to complete their opening statement take less than 60 seconds.4

    Gathering information:

    • exploration of problems

    • understanding the patient's perspective

    • Encourage patient's narrative.

    • Use an ‘open to closed’ cone of questioning.

    • Pick up on cues, both verbal and non-verbal.

    • Clarification of understanding.

    • Internal summarizing.

    • Establish time frame and sequence of events.

    • Encourage expression of ideas, concerns, feelings, expectations.

    • Start with open questions. Later on, focus on areas of interest with increasingly closed questions.

    • Summarize information to show patients they have been heard and to give them the opportunity to correct misunderstandings.

    • Encouraging patients to be exact about the sequence in which events occurred helps aids recall and helps patients feel understood.

    • Consider feeding back intuition, such as ‘You say that you're managing, but I get the impression you are struggling on some levels with all you are having to cope with.’

    • ‘Blocking behaviour’ from clinicians includes early offering of advice and reassurance, focusing on physical aspects, explaining away distress as normal, and ‘jollying’ patients along.

    Explanation and planning:

    • providing the correct amount and type of information

    • aiding accurate recall and understanding

    • achieving a shared understanding

    • shared decision-making

    • Avoid use of jargon.

    • Increase recall with summarizing, repetition, clarity, and use of diagrams or written summaries.

    • Ask patients to repeat information in own words.

    • Establish explicitly whether patients wish to be involved in decision-making.

    • Give the range of options and discuss pros and cons of each.

    • Recall of information is particularly poor immediately after bad news has been received. Try to limit the amount of information given and focus on key messages.

    • Higher levels of negotiation or participation in the decision-making process lead to increased satisfaction and compliance.

    • Not all patients wish to be involved in decision-making. This may be decision-specific, and wishes should be established with each important decision.

    • Avoid giving too many options. Explain and provide a rationale for any recommended options.

    Closing the session:

    • ensuring appropriate point of closure

    • forward planning

    • Summarize again.

    • Make contract regarding next steps.

    • ‘Safety netting’—explaining possible unexpected outcomes and when and how to get help.

    • Final checking—check they agree with plan and give opportunity for final questions.

    • ‘Safety netting’ is particularly important for those with advanced disease.

    • Open-ended follow-up appointments should be accompanied with clear instructions about how to make an urgent appointment. Be aware that patients may misinterpret a lack of routine follow-up as evidence of abandonment.

    Throughout consultation:

    • building a relationship

    • providing structure and flow

    • Use appropriate non-verbal behaviour.

    • Non-judgemental, empathetic, supportive attitude.

    • Involve patient, sharing thinking and explaining rationale.

    • Progress from one section to another using sign-posting and transitional statements.

    • Attend to timekeeping.

    • There is clear research evidence that building a rapport with patients increases patient satisfaction and compliance.

    • Sign-posting near the beginning of the consultation that the clinician wishes to consider advance care planning can help patients be prepared for this when the topic arises.

    • An example of a transitional statement: ‘We have been discussing how we are looking after you currently. I wonder whether you would like to go on to talk about how you would like us to look after you in the future?’

    Listening

    The order in which patients present their concerns does not relate to their clinical importance. Indeed, patients tend to save the most difficult questions until the end. Allowing the patient to complete their narrative without interruption greatly increases understanding of the patient's perspective.

    Open questioning

    Establishing whether a patient is prepared to discuss prognosis and plan for the future relies on open questioning. Useful phrases include:

    • ‘How do you feel things are going at the moment?’

    • ‘What are your greatest fears and concerns for the future?’

    • ‘What are you hoping we can achieve?’

    • ‘In your darkest moments…’

    Picking up cues

    Noticing and responding to both verbal and non-verbal cues can be highly revealing and very effective in improving communication. A patient may, for example, mention concerns about how a spouse is coping, which could be indicative of much greater fears for the future in terms of potential length of life and place of care.

    • ‘You mentioned feeling upset yesterday. What are the biggest worries on your mind at the moment?’

    • ‘Yes, it is frustrating not being able to make plans, isn't it? How do you feel things are going at the moment? Would you like to talk about what may be ahead?’

    • ‘You mentioned about when your mother was dying. Are you worrying about this in relation to you?’

    Using a ‘dual approach’

    A well-established technique in discussions relating to the end of life is to take the dual approach of encouraging and sharing hope, while also making plans and preparing for death:2 , 3

    • ‘I encourage you to hope for and expect the best, but it is also wise to prepare for the worst.’

    • ‘I share your hope, and we will do our very best to keep things as good as possible. But it's hard to predict the future, and I imagine you would not want to leave all responsibility for making decisions to your family if you suddenly became very sick. Shall we take a few minutes to think about decisions you might want to make in advance?’

    Avoiding unhelpful phrases

    A number of phrases are regularly used without appreciation of the devastating impact the words may actually have:

    • ‘Nothing more can be done…’

    • ‘Stopping treatment…’

    • ‘Withdrawing care…’

    These phrases should be avoided. It should be made clear that limiting potentially life-sustaining treatment, such as CPR or NIV for example, does not equate with limiting care. ‘Not for resuscitation’ does not mean ‘not for active treatment…’ Patients with advanced disease inevitably feel a degree of abandonment. It is vital not to compound this with insensitive communication. Be explicit in your explanations:

    • ‘We are not going to give up trying to help you. Although we cannot change what this disease is doing, we will do our best to help you live with it, with as good a quality of life as possible.’

    Improving communication skills

    Most communication skills are acquired in the first few years of practice, when perceived time pressures can discourage patient-centred communication. Although some people have a natural ability to communicate well, there is clear evidence that communication skills are not simply innate. They can be learned and improved.

    Communication skills courses provide research evidence on the importance of good communication skills, demonstrate the skills to be learned, provide an opportunity to practise the skills, and give constructive feedback on performance. There is evidence that communication skills training can change a clinician's behaviour and improve communication.

    In the UK, a national programme for advanced communication skills has been developed. This offers a 3-day training course for senior health professionals working with patients with cancer. See www.connected.nhs.uk for further details.

    Mr G was a 65-year-old man with lung cancer. He was admitted with a chest infection and recovered slowly. This was his third chest infection over the last 2 months. On a ward round prior to discharge, the doctor asked him how he felt things were going overall.
    Mr G: ‘I don't know, and I don't want to know. I just want to get out of here.’
    Doctor: ‘I can see you are feeling upset. And I can understand that there must be a lot on your mind at the moment. What are you finding the single hardest thing at the moment?’
    Mr G: ‘My wife has always relied on me for everything, and she won't cope if I'm not there. And don't you go telling her what is going to happen.’
    Doctor: ‘You are clearly feeling that the future is not looking good... I've noticed your wife looking very tearful in the corridor the last couple of days. I haven't talked to her about your condition, as we had not agreed that I could. But I do get the impression she knows what is happening, and is feeling rather scared. It is quite common for people to feel very alone at this sort of time, because everyone tries to protect each other by not talking about what the future might hold.’
    Mr G: ‘You mean she might know and isn't talking about it because she doesn't want to upset me…? I didn't think she knew…’
    Doctor: ‘I suspect if you gently brought up talking about how things are going with her, you'd find you've been thinking about many of the same things. Neither of you would then be alone in your own worries during this uncertain and difficult time…’
    Mr G did indeed choose to talk more openly with his wife that evening. The next day he shook the doctor's hand warmly as he left the ward.
    ‘I'm so grateful to you. We're in this one together and stronger for it. And we've decided to take a trip to our caravan this spring while the going is good…’

    References

    1. Kurtz SM, Silverman JD, Draper J (1998) Teaching and Learning Communication Skills in Medicine. Radcliffe Medical Press (Oxford).Find this resource:

      2. Back A, Arnold R, Quill T. 2003. Hope for the best, and prepare for the worst. Ann Intern Med, 138:439-43.Find this resource:

      3. Hansen-Flaschen J. 2004. Chronic obstructive pulmonary disease: the last year of life. Respir Care, 49:90–7.Find this resource:

      4. Beckman H, Frankel R. The effect of physical behaviour on the collection of data. Ann Int Med 1984, 101: 692-6.Find this resource:

      Sharing bad news

      ‘Break bad news well and you will always be remembered; break bad news badly and you will never be forgotten.’

      Oxford Handbook of Palliative Care 2005

      Breaking bad news to patients and their families can be challenging and stressful. It is the form of communication that clinicians tend to dread most. However, bad news can only be judged ‘in the eye of the beholder’, and the impact of the news is greatly influenced by the recipient's existing understanding and expectations.

      It is unusual for patients with advanced, progressive disease to have no concept at all of the life-limiting nature of their condition, although they may well have chosen not to discuss it, or even tried to deny it. In practice, bad news given with compassion and encouragement of realistic hope tends not to have the devastating impact that one might have envisaged. Bad news discussed is rarely worse than bad news imagined.

      Barriers to breaking bad news

      Healthcare professionals are uncomfortable breaking bad news for a number of reasons:

      • Uncertainty about the patient's expectations.

      • Fear of destroying the patient's hope.

      • Feeling unprepared to deal with the patient's or family's emotions.

      • A sense of failure at being unable to control the progressive disease.

      • Embarrassment at having painted too optimistic a picture previously.

      • Wanting to avoid a stressful and time-consuming task.

      These factors can mean that professionals put off initiating ‘bad news’ conversations, such as discussion of prognosis. It is vital not to allow these barriers to hinder communication. There is clear evidence that patients want to be told the truth about their illness and prognosis. Without honest communication it is not possible to plan for the future. A patient may therefore die without having had time to prepare for death, leaving family shocked by the unanticipated turn of events.

      A framework for sharing bad news

      The process of breaking bad news should be a flexible process that is tailored to the individuals concerned. The following framework provides a basis that can be adapted according to each set of circumstances.

      Prepare carefully

      • Be as well informed as possible about the clinical situation, including previous information given and the patient's response.

      • Arrange a comfortable and private environment, with tissues available.

      • Make sure there is sufficient time available and take steps to avoid interruptions, such as turning off pagers or mobile phones.

      • Particularly if time is relatively limited, ensure a colleague with more time is able to join the conversation, staying with the patient afterwards to provide continuing support.

      • Invite family or friends as appropriate, giving the patient the choice. Where there are many family members, ask the patient to choose one or two representatives.

      Gather information

      Sharing bad news tends to be thought of as information giving rather than receiving, and it is easy to omit this step. This is, however, arguably the most important step of all. Without this, communication cannot be tailored to the individual, and is far more likely to result in distress that could have been so easily avoided.
      • Always establish the patient's understanding of the situation first. Try to find out what they already know, and their beliefs and expectations.

      • Ask the patient how much they wish to know. A question such as ‘Are you the type of person who likes to know what is happening (or wants detailed information)?’ can be very revealing. Patients who do not invite further discussion may agree to an offer to speak to family instead.

      Share information

      • Give a ‘warning shot’ that potentially difficult information is coming, such as ‘I'm afraid the news is less good than we had hoped.’

      • Give the basic information simply and clearly. Avoid jargon entirely, and repeat the important points.

      • Speak honestly but sensitively, avoiding excessively blunt turns of phrase.

      • Give information in small ‘chunks’, pausing to check understanding periodically.

      • Relate the information to the patient's existing understanding and beliefs.

      Respond to the patient

      • Gauge carefully the patient's need for further information. Most people are unable to absorb further information if the news has been unexpectedly bad. Give time and space if a patient ‘shuts down’ and stops listening.

      • Encourage expression of feelings, if necessary giving explicit encouragement: ‘How does this leave you feeling?’

      • Respond to any emotional reaction (disbelief, denial, crying, anger) with empathy: ‘I know this isn't what you wanted to hear. I wish the news were better.’ ‘I can see how upsetting this is for you.’

      • Try to find out the reason for the patient's emotional response. For example, news of a short prognosis may lead to sadness not at the thought of dying, but at the prospect of being a burden on a spouse.

      • Check the patient's understanding of the information that has been given: ‘Would you like to run through what you might want to tell your family?’

      • Avoid becoming too upset, as this inappropriately burdens the patient with trying to protect the news-giver. However, subtle non-verbal evidence that the professional is feeling saddened can be supportive.

      Planning and support

      • Try to develop a plan with clear future steps. This can reduce anxiety and uncertainty. It may be necessary to do this in a subsequent consultation, ideally not that long after the initial conversation.

      • Foster realistic hope by considering what it is possible to accomplish, such as good control of symptoms, ability to attend an important family event etc.

      • Discuss and arrange future support. Patients tend to feel isolated and fearful after having received bad news, and continued support from familiar members of their healthcare team is of great value.

      • Document the content of the discussion clearly. A summarizing letter written to the general practitioner should be copied to the patient. Consider giving the patient other written information in addition.

      Communicating with carers

      ‘Patient and caregiver information needs show a tendency to diverge as illness progresses, with caregivers needing more and patients wanting less information.’

      Parker et al. (2007)1

      In the UK, over 50% of complaints received by the independent regulator of healthcare relate to care at the end of life. The commonest source of complaint is poor communication, usually with family members.

      General principles relating to communication with carers are given below. Specific communication needs of families in the terminal phase are detailed in Chapter 12, and further guidance about family support and bereavement care is given in Chapter 14.

      Confidentiality

      Always respect patient confidentiality. Communication should not occur with family members unless the patient has given explicit consent for this to happen, either concurrently or in the recent past. The only exception is where the patient does not have the capacity to give consent. In such situations, it is usually in the patient's best interest for communication to occur with family.

      Try to gain consent for family members to be included in important discussions with patients from the start. If patients do not wish to discuss their disease or undertake advance care planning, or if they ask for family not to be included in such discussions, their views should be respected.

      In practice, however, it is rare for a patient to continue to withhold consent for communication with carers if it is sensitively explained that the family member would find it easier to cope if their questions and concerns could be addressed. Should consent still not be forthcoming, gently explore the reasons for the patient's approach.

      Patients may fear that open communication with a fragile family member would lead to distress and breakdown. Address such concerns compassionately, including explanation that imagined fears are often even worse than reality. Patients approaching the end of life tend to be greatly reassured when they understand that the healthcare team is taking on responsibility for supporting their close family.

      It is ideal for communication with carers to occur during conversations with the patient, so that all parties are privy to the same information. However, there can also be a place for communication with family alone, with consent, as this may allow the family member to speak more openly than he/she would feel comfortable doing in front of the patient.

      Early and explicit communication

      Two important features of advanced respiratory disease lead to the need for early and clear communication with family members:

      • High frequency of misconceptions about the progressive nature of chronic non-malignant respiratory disease such as COPD.

      • Unpredictable trajectory, with typically sudden and unanticipated decline in the terminal phase.

      Actively seek out and address misconceptions about the patient's disease. Whereas with advanced malignant disease, hints such as ‘things are not going that well’ may be understood, in non-malignant disease it may still not occur to family members that the condition will be life-limiting.

      Explain that the difficulty in predicting prognosis means that it is worth being prepared for a wide range of future outcomes, from relatively stable disease to rapid deterioration and unexpectedly early death. This both fosters hope, while also preparing for the worst.

      Mrs S complained to the local hospital about the care her late husband had received during his final admission. Mr S had had three admissions to hospital during the winter, with infective exacerbations of COPD. Each time he had recovered with IV antibiotics, and she had assumed the same would occur this last time. However, he became very agitated one night, and a doctor phoned her and said that she ‘had to come quickly’. Within minutes of her arrival he stopped breathing, and she was horrified that no one attempted to resuscitate him. She screamed at the healthcare team to ‘do something’ and was told it was ‘too late’.
      She said in her letter of complaint that no one had ever told her that he might die from his ‘bronchitis’ and she was sure he would have wanted the doctors to treat him more actively. If they had known how ill he was, they would not have just sold their house and would have planned the last few months very differently, including taking a holiday in their favorite resort on the south coast. Now, several months on, she was still locked in despair, with regular nightmares relating to the events of the last minutes of her husband's life.
      Significant event analysis led to the following insights and outcomes:
      • No healthcare professional had taken responsibility for discussing prognosis and advance care planning with Mr and Mrs S. The community primary care team had assumed the hospital respiratory team would do this, and vice versa.

      • It was decided that the respiratory nurse specialist team would take overall responsibility, and training in advanced communication skills was made mandatory.

      • The respiratory nurse specialist team was reconfigured to give more time for outreach domiciliary visits, to create better opportunities for advance care planning discussions to occur at home.

      • An audit of the hospital resuscitation policy was undertaken, to ensure that all resuscitation decisions were discussed with patients and their family (other than in exceptional circumstances where such a conversation was believed to be likely to cause harm).

      Reference

      1. Parker S, Clayon J, Hancock K et al. (2007) A systematic review of prognostic/end of life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Sy Manage; 34 (1): 81–93.Find this resource:

      Communicating within healthcare teams

      Patients with advanced respiratory disease are cared for by a wide range of health carers from a number of disciplines, across several settings. Accurate sharing of information under such circumstances can be a considerable challenge.

      • Weekly multidisciplinary team meetings in inpatient settings are vital. These provide a forum for debate, as well as communication of facts. The outcomes of discussion must be recorded in the patient's notes.

      • Discharge and clinic letters should be copied to key professionals across all settings, as well as to the patient.

      • Information technology can facilitate accurate and speedy communication across settings. In the UK, technology is being developed for electronic patient summary records to be stored on a national Care Records Service, accessible across all settings.

      • Link nursing roles between community and inpatient settings can play an important part in ensuring sharing of information and continuity of care.

      • Communication can be enhanced by having a patient ‘key worker’, providing a single point of contact for the patient and other healthcare professionals. Respiratory nurse specialists working across community and hospital settings can be well placed to fill this role. See Communication with patients and families Chapter 10, [link] for further details.

      Further reading

      Advance care planning: a guide for health and social care staff. www.endoflifecareforadults.nhs.uk/assets/downloads/pubs_Advance_Care_Planning_guide.pdf.

      Baile W, Buckman R, Lenzi R et al. (2000) SPIKES – a six step protocol for delivering bad news: application to the patient with cancer. The Oncologist; 5: 302–311.

      Barnes K, Jones L, Tookman A, King M (2007) Acceptability of an advance care planning interview schedule: a focus group study. Palliative Medicine; 21: 23–28.

      Dying Matters Coalition website: www.dyingmatters.org/

      Steinhauser K, Clipp E, McNeilly M et al. (2000) In search of a good death: observations of patients and providers. Annals of Internal Medicine; 132: 825–832.